Self Help; Managing your health.

This article and the CLLSA site is not intended to be a substitute
for professional medical care and we would always advise you to
check with your doctor if you have any concerns about your condition
or treatment.

These articles
cannot cover all the areas that affect your health. The key to
staying as well as you are able is to think about your lifestyle and
when you do things.

Consider what you read carefully- you may need
further advice.

Any one who has been diagnosed with CLL has a damaged
immune system. This means that we are more likely to get infections,
and less able to fight them than healthy people of the same age.

Words that your
doctors may use are immunosuppressed, leucopoenia,
myelosuppression, pancytopenia,thrombocytopenia,
granulocytopenia–they
are all connected to having a damaged immune system.

To find out about
your own immune status and health talk about your particular
health needs with your hospital (haematology or oncology) doctor and
your own GP surgery.

Although we can
theorise about how good your immune system is at various times in
the CLL journey, think about what you actually need. If you are
getting many infections, or your cuts infect easily, or you do not
recover well from colds, go back and talk to your doctors to decide
what you need to do to stay healthy.

If you are having
treatment for CLL (chemotherapy or other drugs) or you have had a
stem cell transplant then you are more at risk from infections than
‘ordinary’ CLL patients. You will have had clear instructions from
your doctors how to protect yourself and when to contact them if you
are ill, there are also some links included here.

Links in this section

Two warnings- always
consider what you read carefully, it may not apply to you. Although
I have selected the most useful sites that I can find, (April 2011)
things change fast over time. As we get more knowledge, the sites
may become inaccurate. Some of the sites are commercial; inclusion
of their site is not an endorsement of the product. CLLSA has no
links with the manufacturers but their sites are currently the best
way of providing the facts.

Risk Management

Some of the facts
and links on this page will apply to you, some will not. Risk
management is about knowing where the risks are and if you are
willing to take them. You have to decide for yourself.

Take
Your Meds

If you have
medications for any condition take them as directed by your medical
team.

Take any medicines
that you have been given to protect you from infections-
(prophylactic medicines).

Getting Help with your medicines

For minor ailments
you can ask your pharmacist- the pharmacist needs to know all your
medications including anything you buy for yourself like indigestion
tablets or pain killers. You can ask for help by telephone to the
pharmacy.

For other problems-

NHS Direct- 0845 46 47 a 24 hour help line.
Or; http://www.nhsdirect.nhs.uk/if you have not
visited the site already, check it out. (April 2011)

GP Surgery- keep the number by your telephone.

Work
with your carer and family.

Make sure that your
carer and your family know what they need to know about your
conditions and when they need to help you. Working together you can
avoid more problems- more time for everyone to get on with what they
enjoy. There are jobs around the home that you should avoid if you
are immune suppressed. Pregnant women are also immune suppressed and
at risk- see
http://www.healthline.com/yodocontent/pregnancy/infections.html.

If a family member
is pregnant, then the pregnant woman needs to know her risks as well
as you do, and any high risk tasks should be done by a third party.

Reporting Symptoms- seeing your doctors

To help your doctors to help you, keep a diary of
your symptoms. To see which symptoms are relevant to CLL a good site
to read is (add the link form home computer). But record and take
the notes of all your symptoms. CLL symptoms include night sweats,
and the number of infections that you have had.

Take your notes to
each visit to the doctors, including your GP. Very occasionally your
visits to the surgery or hospital may be recorded on different
‘screens’ at the surgery or clinic, so while you may be aware that
you are had 4 infections in 3 months, the doctor would not be. Have
a summary ready-‘4 infections in 3 months, night sweats every
week’ to quickly give the doctor the important part of the picture.

If you are having chemotherapy or a stem cell
transplant, you will be given emergency help lines and told when to
contact them. Keep the numbers by the phone.

Don’t wait- get help

CLL patients do not
have the luxury of being able to wait for a doctors appointment. If
you have a temperature, or feel ill, then get in touch with your GP
or NHS direct. Do it now, not Monday morning. If you contact any
medic, or have to go to accident and emergency for treatment, repeat
to every new doctor or nurse that you talk to that you have CLL, and
have a damaged immune system.

What can I ask the NHS for?

At any time, you can
ask to see your GP and get referred back to the hospital. If you are
not happy about your health, then you could well be saving the NHS
time and money by self referring.

If you have trouble
with talking in front of a doctor, or disagreeing with a doctor even
for your own good, then consider taking a friend to help talk to
them with you. You and your doctors are a partnership, and they need
your information just as you need the doctors’ information.

You can ask for a
second opinion on your CLL through your GP or through your hospital
doctor. This is available on the NHS.

Tiredness
or Fatigue

If you suffer from
tiredness or the fatigue due to cancer or treatment, learn to pace
yourself. Getting CLL and getting tired is not your fault- if you
can pace yourself, you can get the most out of life.

Vaccinations

Although CLL
patients may not get the full protection from vaccines, it is
recommended that are vaccinated.

Your own immune
status must be determined by your own doctors. There are no rules
that say that a new CLL patient does not have a damaged immune
system or that at 6 months after chemotherapy your immune system
will have recovered. Unfortunately, there are many people who have
damaged immune systems many years after chemotherapy.

If you have not had
a stem cell transplant, you will probably still have immunity from
any vaccinations that you have had before. We all need new ‘flu
vaccine every year as the ‘flu virus changes.

You won’t get ‘flu
if enough of the people around you are immune. So when there is a
‘flu epidemic, ask your family and the people that you see most
often to get vaccinated. This will cut down your chances of getting
flu.

The whole you-

You are not ‘just’ a
CLL patient- take care of the whole you. If you have concerns about
other conditions, get advice and help from the health care
professionals.

Keep up to date with
your dental work, and any specialist care for conditions such as
diabetes. If you are asked to go to reviews for conditions, such as
asthma, then help your doctors to help you and make an appointment
and go.

Out and about

Washing your hands
frequently and avoiding hand to mouth activities will help you avoid
infections. Take an alcohol gel hand sanitizer with you ( lots of
products, try Superdrug or Boots for small sizes) and use it
frequently-for example

1.After
using a supermarket trolley

2. After
strap hanging on the bus

3. After
you have had to open the outside door the public toilet by the
handle after washing your hands.

Where do you go

The
more often you are in crowds, the more likely you are to get
infections. You must balance this with the life that you enjoy. By
all means go to football if you accept the risk.

Work around things
you can avoid- can you avoid rush hour transport, especially the
underground? That would cut down your risk of getting respiratory
infections.

Consider using the
phone, e mail or msn messenger when you know someone is ill rather
than meeting them.

Tell your friends
clearly and often that you are susceptible to diseases. You may want
to use words like “if you come and see me when you have cold I will
get it. Please could you ring me first if you think you have a
cold?” or even “if you come to see me when you have had diarrhoea in
the last week I will get it and be much more ill than you. You don’t
want that and I don’t want that. Let me know and I will phone you
for a chat, then we can meet again when we are both well.”

We all want to be
close to and hug our families, and usually this is fine. But
sometimes you need to not have close contact to keep yourself well.

You will need to
explain this to your family, something like- “I catch colds very
easily- I don’t want us both of us ill at the same time,” or
whatever your family can understand. Many younger children can be
very responsible if you explain why you are behaving differently
from usual.

If the grandchildren
feel unwell, or ‘off colour’, or are behaving as though they might
be sickening for something, then avoid close contact with them.

Get your family to
tell you when youngsters have been vaccinated; get them to find out
if the child has been vaccinated with a live vaccine. If the child
has had a live vaccine then the child will be shedding live virus
that you might catch and get the disease. You should not have
contact with the vaccinated child until they are clear of the live
virus. Medics can help as each vaccine should have warnings on how
long the person being vaccinated will be shedding virus, so ask the
child’s doctor or nurse.

Nappy changing is
not your job. Dealing with or cleaning up poo (faeces) or diarrhoea
is not your job. If you have to clean up poo or change nappies then
wear disposable gloves if at all possible, and wash your hands
thoroughly with soap after you have cleared away.

·Shared
foods where other people may have contaminated the food- dips,
crackers and peanuts in public spaces.

·Don’t
use the same cup or eating utensils as other people when you are
sharing a meal.

Guidelines for food preparation.

Do not cross
contaminate foods. For example, raw foods such as raw chicken should
not come in contact with cooked foods. In a domestic refrigerator,
the raw meats should be at the lowest level or in drawers where they
can’t drip fluids onto other foods.

Have separate
preparation boards; one for raw vegetables, one for raw meats, and
others for the other foods that you prepare. Shops sell helpful
sets, often colour coded.

Wash your hands
thoroughly after preparing raw foods. Soap and water are fine. Clean
down all surfaces and the utensils that you have prepared raw food
with. First remove any fat and dirt with detergent and water, then
hot wash by hand or in the dish washer.

If you want to
disinfect a hard surface, you can use a spray made for the purpose.
Or thoroughly clean the surface and make a dilute solution of ‘thin
bleach’, I tablespoon to a gallon, wash down and leave to evaporate.
If the surface is scratched, you can’t clean it. Consider getting a
replacement for that old plastic jug.

Going Abroad

Talk to your doctor
about where you want to go and if they feel you should take the
risk; best to do this 3 months before travel, if possible, and
certainly before booking.

Again, this is risk management the choice is
up to you after listening to the doctor’s advice.

If you go away-

Read the list of
foods to avoid for neutropenic people (and seriously consider
applying it to yourself while you are away; It worth risking
traveller’s tummy for a salad).

And -

·Avoid
street vendor foods such as ice cream.

·You
can normally safely eat/drink bottled water (check the seal is
original some unscrupulous traders in poorer countries will refill
old bottles with tap water) and manufactured carbonated drinks.

·Only
drink tap water if it has been at a rolling boil for one minute, and
drinks like tea made from this water. Check with the hotel where the
source of the water for the ice in your drink, or avoid ice.
Freezing does not kill germs.

·Brush
your teeth with bottled or sterilised water, not tap water.

See also-http://www.doh.wa.gov/ehsphl/factsheet/crypto.htm
- the rolling boil treatment kills cryptosporidium spores and many
other disease organisms- check the site above, and don’t forget to
use this boiled water or bottled water to brush your teeth with.

Camping and the countryside

If you have to drink
the water from rivers or lakes, see the advice on cryptosporidium in
‘going abroad’ and boil the water for at least one minute at a
rolling boil before using it for drinking or brushing your teeth.

Swimming, even in
public pools, can lead to cryptosporidium infection as chlorine
treatments are not effective against cryptosporidium.

Hot Tubs, saunas and communal baths

Bacteria that cause
disease can thrive in hot tubs saunas and communal baths, they are
not recommended for immunosuppressed people. But if you know that
the hot tub is regularly and effectively disinfected you may choose
to use the tub.

Places that produce fungal spores

Place that are
always damp produce fungal spores. These are a hazard to people who
are immune suppressed. If you have surfaces at home that grow black
mould, then get advice how to treat and prevent this; it is an
aspergillus mould that can cause serious lung problems.

Other places that
have hazardous spores include compost heaps and animal bedding
(horses, cows) and animal feed (Hay, silage). Get someone else to
turn the compost, hay and silage; turning releases spores.

Gardening and farming,
keeping pets and livestock.

As well as the
problems with spore producing fungi, compost heaps, animal bedding
and soil all contain other harmful germs. These can cause infections
in people who are immune suppressed.

Keep the outside outside

Have a place for
your outside overalls and gardening gear, boots and outside shoes.
Take them off there. Don’t tread soil and pavement mess into the
house- you can not disinfect a carpet.

For gardening, you
can get farm overalls from you local farm shop that wash and dry
well. Unattractive but tough, wearing the overalls reminds you to
change your clothes when you come back in. Not cheap but
hardwearing.

Soil

If you want to
garden, then protect yourself by wearing gardening gloves and get
someone else to dig, mow the lawn, turn compost heaps and soil.

Animals

Some animals that
are often kept as pets can have germs that spread to people and
cause disease.

Immune suppressed
people should not have contact with young animals particularly cats
under one year old.

If you have CLL
do not help with animals of any kind giving birth- the risk of
infection is high for you.

Diseases from
animals can be difficult for doctors to diagnose as the diseases are
rare. Your treatment can be delayed.

Animals in the house -

1.
Cats bury their poo with their feet and then walk on any
surface. Even if they are kept out of the food preparation
areas, they contaminate other surfaces.